Dying for a Heart
Ted Segal was racing against the clock. If he didn’t get a transplant in six months, he’d be dead. Any number of surgeons and organ banks in Texas were available to help him, but a wrong turn could kill him as sure as anything.
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The Old Pump
Years of sicknesses, children, financial problems, and other family crises had knit Pat and Ted Segal tightly together. They trusted each other’s strength absolutely. In early June there was not question in either of their minds that a heart would come. That they would have to adjust their lifestyle to a new set of circumstances seemed obvious. They would simply cope as they always had.
On the outside, they did it admirably. They settled into the Lexington. Ted’s condition, coupled with the heat, kept him a prisoner of his room and the television. Pat busied herself by going to Austin grocery stores, reading junk novels, and talking to her friends on the phone. She wore a beeper, which gave her some measure of freedom, but she chose to stay close to Ted. They took short walks to the pool to watch the life of the hotel. They dubbed the other regulars the Pervert, the Golfer, and the Lady’s Man, and one night they watched a drug bust. In the evening they explored restaurants to see which ones made the best salt-free meals. But beyond that, any semblance of a normal life stopped.
They looked forward to visits from their children. Bradley would be attending the University of Texas that fall and was looking for an apartment in Austin. Tracie and Scotty had a new baby, and Dena and her husband, Homi Seirafi, were expecting one in November. The experience of being grandparents was new and exciting for Pat and Ted, and they were sure that by the time Dena’s baby was born, Ted would be on the road to recovery. For now, they were just glad that Ted was not in the hospital tethered to an IV.
Ted was like a man treading water in a maelstrom. The episodes of congestive heart failure scared him because they were beyond his control. He had been a competitive athlete, and his fear of losing to his own heart, of all things, kept him struggling to stay on the surface. But he always feared that something, anything, would pull him into heart failure again.
Pat had always trusted Ted’s resilience so totally that every time they had wheeled him into the emergency room, she knew he would come back. Now, even though Ted had had some tough breaks, God still seemed to be holding that lucky star over him. After all, it wasn’t an accident that technology had arrived just in time to save Ted. The only thing that terrified Pat was the thought of having to sit by helplessly while Ted was in surgery. “It’s really weird,” she said, “to think of those few moments when his chest will be a big hole, when he has no heart at all.”
But Ted wasn’t bothered that his heart was going to be thrown away. “It’s just like an old pump in a broken car. If it can’t be fixed, you replace it. It’s not like they’re transplanting my brain,” he said.
What bothered Ted was that one day soon—he didn’t know when, but it had to be soon—some unsuspecting person would wake up, have breakfast with his or her family, go to work, and die. That unknown someone had Ted’s new heart, and Ted knew how upset his own family was. It unsettled him even more to picture a grieving widow or parent having to give away a loved one’s organs. Because a heart can survive no more than four to six hours without blood and oxygen, Ted Segal would probably finish out a day with a heart that had beat in another person that very morning.
The donor could be of any sex, race, creed, or nationality, could range in age from thirteen to forty, and could be as close as next door or as far away as two-hour jet ride. All that was required was that the donor have a healthy heart with type B-positive blood (Ted’s blood type) or type O (the universal donor) and roughly match his size and weight.
Ted’s presence at Seton was a coup for the young Austin program. For starters, it showed that people from other places in Central Texas would come to Seton for a transplant; it also brought publicity. Because Ted and Pat were open and articulate, they were naturals for television. KVUE-TV in Austin had been hot for a step-by-step transplant story, following a patient from initial evaluation through surgery and into the aftermath. Ted and Pat hoped that their story would increase donor awareness and draw attention to their plight. Seton was eager to have its image as a major medical center bolstered. Reporter Anna Martinez and cameraman Paul Rios, Jr., were assigned to the story and began to follow the Segals for several hours a day; they too wore beepers and were on call in case a heart came.
At first, Martinez and Rios were disarmed by Pat and Ted’s humor and candor. Only after three or four weeks did the couple’s apprehension and terror begin to emerge on film. “It was like they were anxious to get the surgery over with and move on to the rehabilitation,” Martinez says. “Another patient waiting at Seton had a successful transplant, and that seemed to increase their agitation, especially Pat’s. They were wondering, ‘Why can’t it be us?’”
To add insult to injury, that transplant story made the front page of the Austin American-Statesman and revealed that the patient had waited only two weeks. But as Bobby Richards explained to the Segals, the other patient and the donor each and type A blood. The patient was much smaller than Ted, and the donor had been a thirteen-year-old boy; their body weights were close. Even though Ted had waited longer, the donor heart had fit the other man and wouldn’t have worked for Ted at all.
Paul Rios, like Pat and everyone else closely associated with the Segals as they waited, began scouring the newspaper for accidents in the area; they key words were “critical condition with a head injury.” What would ordinarily be considered a morbid perversion became a daily routine.
The first week in July, six weeks after entering the program, Ted was still waiting. A Chicago-area hospital had offered a heart, but the donor was 46 years old and had been a smoker. Dr. Oswalt decided against it. Besides, as Ted had always said, pounding his chest, “I want something young and Primo.”
The Fourth of July, traditionally a time for car accidents and donor organs, came and went with no new heart. Each Monday brought depression for Pat and Ted because, as Pat said sardonically, “no one had died over the weekend.” Pat was beginning to jump at each ring of the phone. “I’m a Jewish mother,” said Pat, “and I’m used to being in control.”
Six weeks turned into eight weeks, and Ted and Pat began to have doubts about Ted’s chances. For one thing, the Central Texas Organ bank at Brackenridge Hospital, the procurement agency that would provide Ted’s new heart, covered only Travis County and the ten surrounding counties. And those counties were generally rural, lessening the likelihood of donors by violent death. Perhaps the organ bank was casting too small a net. Was there somewhere else they should be looking?
Supply and Demand
The offices of the Southwest Organ Bank in Dallas could not be more nondescript. A receptionist sits at the front with a telephone and a computer. Coordinators work two to an office. The only hint in the summer of 1987 that this was the second-largest organ bank in the country (behind one in Los Angeles) was the stack of Igloo ice chests at the doorway.
Founded in 1975 by three doctors, including kidney specialist Martin White, Southwest Organ Bank was originally a nonprofit, independent organ-procurement agency for the kidney-transplant programs at Dallas’ Parkland Memorial Hospital and Veterans Administration Medical Center. Even during the pre-cyclosporine hiatus in heart transplantation, kidney transplant continued. Kidneys can last for as long as 36 hours after removal, allowing immunologists time to make better matches between donors and recipients.
By 1976, San Antonio had a procurement agency, the South Texas Organ Bank, followed by another at the UT Health Science Center. Houston had two competing organ banks, one for the Multi-Organ Transplant Center and another serving the Texas Heart Institute and Hermann Hospital. With the advent of cyclosporine and the increased success rates of heart, lung, liver, and pancreas transplants, it soon became obvious that the network for sharing organs needed to be expanded and streamlined. The solution was a computerized clearinghouse, with organ banks serving as middlemen in an increasingly sophisticated process unofficially know as organ “harvesting.”
Once a family has agreed to donate a relative’s organs, the organ bank first looks for a local recipient. If one is not found immediately, the organ bank taps into the computerized waiting list at the United Network for Organ Sharing, in Richmond, Virginia. By sorting through its data base of patients according to organ size, blood type, urgency, and location, UNOS can identify a recipient somewhere else in the country in a matter of minutes.
But like most structures, this cleaning-house for organs has its flaws, all of which stem from the fact that the demand for organs far exceeds the supply. Each year, between 14,000 and 20,000 Americans suffering from end-stage heart disease would benefit from a transplant, but only 1,000 to 1,200 donor hearts are available.
To handle the pinch, the medical community has devised objective guidelines for who gets a heart. Until October 1987 UNOS worked by a simple point system. Every patient in the computer had a number—1 for “hospitalized and waiting” and 4 for “home and able to work.” A special designation, “UNOS STAT,” meant the patient was on life support with less than twelve hours to live. Under UNOS guidelines, organs automatically went to the sickest patient, if no local need existed. The problem was that doctors often inflated their patients’ ratings to move them up the UNOS list.
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